Fibromyalia

[Terrie2008]

Hi Everyone

Let me start by saying happy new year.

Some time ago I posted about my visit to the neuro letting me know that that mri result came back clear and I no longer need to see him (didnt want to any way).

In the mean time my GP had arranged for me to see a rhromertoligist the week before xmas I got a phone call from the hospital saying they had a appointment xmas eve would I like it yes please.

So xmas eve off I went to see the rhromertoligist, I felt so ill that morning which in a way was good.

So straight away I knew by the way the dr greeted me that he was going to listen I almost felt better before sitting down (almost).

I explained every thing to him he examined me made me sit and stand ten times did not thank him for that  which took 35seconds nearly killed me.

He then took all his finding to the top man and 10mins later top man came in (I cant think what his name is he did say but I was suffering with the stand and sit).

Anyway he made me stand up and pressed all the pressure points I said owwwwwww a lot then we sat down he said I dont think you have the polymyagia he is almost sure I have the fibromyaliga and all that I have told them is typical of fibro he gave me a booklet which was good reading one part which I will quote says.

What is fibromyaliga?

Fibromyaliga is a name for widespread pain affecting the muscles but not the joint. It is a chronic condition,but it is not life-threatening or progressive and and does not cause permanent damage to muscles,bones or joints.There are usually no outward signs of the condition and people with fibromyalia oftern look well but feel awful.Because of this other people may not appreciate the pain and tiredness you are suffering and this can cause additional distress.However, it is important to stress that the pain suffered by people with fibromyalia is real and may be severe,even though it is usaually not associated with visibible swelling or deformities of the muscles or joint.

He wants me of the steroids as I do so thats good but he does not want it taking months so he said I have to drop from 11mg to 8 bloody hell 3mg just coming of 1mg knocks the socks of me then two weeks after that drop again then again I asked if I could do that on the 26th of Jan as I have a trip planned and I cant be dealing with that untill I come back so he agreed,oh I cant wait.

He is also sending me for some electrodes and a muscle byopsie  but the waiting list is 8 to 12 months but he is not worried about that he just wants to rule out other things.I have also got to walk for 1 min at a good paste every day.

They have taken blood test so I am now being looked after thank god.

PS I have been doing my 1min walk since xmas eve and im in more pain now than before its killing me but I will carry on till I see him again.

Thanks to everyone who gave me advice in the passed and I hope you all find the route of your problems.

[Terrie2008]

Thank you I will look for her.

[doni54]

Hi Terrie,

I am so glad you found a good dr who would listen to you!!  I'm also glad that you now have your dx and can start the treatment and hopefully get better.

We don't want you to leave us, we would miss you.  Please keep in touch and let us know how you're feeling and how your treatment is going.

I have a beautiful friend who was really active on the forum for awhile and she was dx with Fibro.  She would be a good one to talk to about this.  Her name is Samantha and she is UK2 here on the forum.  You could private message her and maybe she could give you some tips on meds to mention to your dr.

Good luck and all my best, Terrie.

Hugs,
doni

[Terrie2008]

Thank you for your great replys

Standing up and sitting down was just a test of my fitness.... in the future they will ask me to do it again and then will see how long it takes and compare it to my original time... just to see if I'm getting better !!!!! or worse !!!!!.

Rena705 .. you made me do that watery eyes thing.. lol

I will post any further news / happenings as they happen.

[Rena705]

Hey honey...well I am so glad that you are finally being cared for and there is a possible light at the end of the tunnel for you.  While having Fibromyalgia is definitely no picnic at least you have some answers that you have been so desperately seeking and you will hopefully get some treatment soon.  

However, just because you have a possible diagnosis other than MS doesn't mean that we have seen the last of you I hope!  We can still be here for you in times of need and you can be a lot of help to others that are just starting out on their journey's!  Please don't forget about us and let us know how you are progressing and what more answers you get.  You are a part of us now and just can't leave!  We will be looking forward to hearing how you are doing in the future honey and we wish you the best of luck!

Lots of Hugs,

Rena

[Wobbly]

I'm glad you have some answers and hope treatment can help with the pain.  I wonder why they asked you to stand up and sit down so often?  ummm

well take care and keep us informed on how you are doing...

wobbly
undx

[jensequitur]

I'm glad that the rheumatologist was willing to listen to you!  At least they have somebody treating your symptoms.

I've always thought that my grandmother must have had fibro - she was always having pain and stiffness, but they could never find anything wrong.  They just labeled her as a hypochondriac and sent her on her way!